Signal delay

Dear Jeff ...

I don't chronicle your week-by-week progress here. It's hard to explain why. I think it's a combination of protectiveness (of you) and fear (of what the rest of the world will think). I think everyone knows from either reading the teamjeffie updates, or reading between the lines here, that you're lucky to be alive at all. You're lucky to be awake, and breathing, and aware of anything at all.

What we're in right now is in-between land. You aren't sick, not really, but you aren't well, either, and it's impossible to predict when shadow will be replaced with sunshine. What you had is called an anoxic brain injury, and seven months ago tomorrow, I was faced with the single most horrific choice I have ever had to make:

Do I sign a DNR?

The nursing staff in the neurological ICU played me straight, I'll give them that. We knew you didn't have a great chance of waking up, and your chances of having a full and normal life past that were completely unknown. I have never felt so utterly alone in my entire life as I did when I made that decision for you. We have all joked so often about having someone's life in our hands, but the reality of one's lifemate hovering on the edge of death is starker than words can convey.

When it came down to it, in that first awful hour when it was only Crystal and me in the hospital room with you, I couldn't sign. Not that night. It was too soon. Then we kept waiting, and we got indications that you might be in there, and we kept waiting and hoping and somehow, the DNR question never came up again.

I would love to give the world a heroic face and say, no, I couldn't sign it. The world loves a good, uncomplicated, devoted-spouse story, but the reality was -- and is -- more nuanced. I didn't have the guts to do it, and eventually the question became moot. Indecision is also a decision, and I have hoped on a daily basis since then that I made the right choice for you. You have told me, even amidst sadness and struggle, that you were grateful for my [in]decision, and that statement went a long way toward healing the scars left from the nights of sobbing myself to sleep, wondering if I had doomed you to a miserably handicapped life.

(To those friends who held me when I cried so hard that my entire body shook, you know who you are.)

Seven months post-accident, your life is both complicated and simple. You have a laptop, which you use to send emails that sound so much like you did pre-accident that sometimes I have to go to the bathroom and cry privately, because it's like hearing a ghost. You do speak, though it is halting, measured; there is an extreme economy of words. Language isn't your first language right now. When someone speaks, I can feel the pause in you as the words sink in, and your response is formulated. Thinking in words is not natural for you right now, and it struck me once this weekend that I am watching you translate -- my words into your thoughts, and then your thoughts back into words.

You walk without a walker now, though your gait still holds the stutter-step of ataxia. Walking isn't easy; it requires effort. You relied on the walker for quite some time, and I think now a cane might be helpful to you, but you find it disruptive and have chosen not to use one.

I hold my breath every time you approach a level change. Any time we are walking a relatively long distance or are taking steps, I ask if you want to hold my hand or put a hand on my shoulder. Sometimes you want it, and sometimes you don't. There is a fine line between being a responsible caretaker and a respectful spouse. I don't always get it right.

I err a lot toward independence, choice, and trains of thought. Today you asked me what time we needed to leave to meet up with Geof for coffee. I could have told you 12:15, but instead I made you work for the answer. "What time do we need to be there?" (12:30) "Where are we meeting?" ("Madison.") "How long does it take to get there?" (15 minutes) "So what time would we need to leave?"

"12:15." Bingo. I've been reminded from time to time of the essays I had to write in college, in that literature degree I abandoned; the process of how you arrived at your answer was often just as important as the answer itself.

You still struggle with emotions, but if we're being honest here, you were struggling with them prior to the accident. Prior to the accident, you fit pretty well into the description of very high-functioning Asperger's; I remember our years of jokes about the blurry, blurry line of distinction between Asperger's and a damned good engineer. Your counselor has told me many times that you fit almost every description of Asperger's minus the repetitive behavior, and you understood emotional needs much more quickly when they were phrased in terms that are commonly understandable to people with Asperger's.

Since the accident, and since your beginnings of returning home on weekends, I've begun to work with you on how to be married. You are having to relearn how to reach out, how to touch, how to apply verbal and physical kindness. You were never particularly sensitive to touch, so you are having to relearn how your wife (who is a bit of a snugglebot) finds reassurance and comfort in small things, like having her neck rubbed or her hand held.

You say, "I love you," far, far more than you ever did before the accident. It is a small and breathtaking change. I'd give it back if it meant we didn't have to go through what we've been through in the past seven months, but if it's the solace I'm going to have, I'm going to take it and not look back. Every time you say it, I flash back to one of those myriad horrible moments in the neurological ICU, the trauma ICU ... all of those variously awful wards we were in ... all of those times wondering who you would be when you woke up, and whether or not you would remember enough to remember you, remember me, remember us. I never believed I would hear those words again in your voice, and I try to treat each utterance as a gift.

This weekend has had a lot of heavy lifting for you, socially. Yesterday we had a friend (Chris A.) come over to help us with the house server. I had to encourage you to go sit in the computer room with him as he assessed our machine, but once you went in there. I heard you talking, and it was comforting to me to hear the give-and-take of conversation. It wasn't the fastest or smoothest conversation, but you were attentive and interested and held on well, and it comforted me.

Today we had lunchtime coffee with Geof, who understands better than most what it is like to have someone you love go through a brain injury. (His mother survived a stroke, years ago.) Today you didn't talk much -- sometimes it's hard to get in edgewise when Geof and I get on a roll -- but we stayed longer than either of us had intended and, in order for me to get us to our next stop on time, I had to leave you in the shop with Geof for a while as I ran an errand.

I don't know what you talked about today, but I know you talked. I know Geof listened. I know the two of you have a rapport, and sometimes the best thing I can do is just get out of the way.

Afterward, we went over to Hallie and Remy's for a group dinner. This part was hard for you, because six little kids in a room means a lot of racket, and you struggle to follow even one conversation at a time. You sat quietly, got through dinner, and waited until the kids went to the pool. You, Hallie, and I sat in the living room while I cut fabric, and we carried on a conversation. You struggled, but you managed. It wasn't a lot of words, and they didn't come out fast, but I think you could see that Hallie was just glad to have time with you.

Today you learned that when you're ready to start coming home for a weekday each week, there are several of the stay-at-home moms who would love to see you for a while during that day. If you're willing to be flexible with their kid-oriented schedules, they would love to have some adult-conversation time. You wouldn't need a lot, just someone to help you get to the gym to continue self-directed physical therapy, but unspoken is the understanding that you need the time with encouraging friends as much as you need the physical rehab.

I made sure to emphasize this afterward: we can make this work. It won't always be ideal, and it might not always be as quick as you'd like, but there are people who love you and want to spend time with you, and they look forward to the chance to get more time with you.

I've promised to get my hands on the oldest, most beaten-up car I can, and to take you out to the old airport tarmac on the southeastern side of town when you're ready. You're not ready to try driving yet, but it's clear that eventually you will be, and my goal is to start small and give you every possible opportunity to succeed before we start gradually upping the degree of difficulty. Open tarmac, then sleepy neighborhood, and then someday turns and traffic and going down the street to the gas station.

Oh, and your vision is slowly clearing up. You had severely doubled vision for the first few months you were conscious, and as predicted, it is improving. You are wearing some pretty impressively prismatic lenses to help you see, and slowly, your brain is relearning binocular vision. You will be grateful when the prism film is finally removed, because you like razor-sharp vision and these always keep your vision a smidge foggy.

In time.

That phrase gets me through a lot of things.

I miss having a life partner. Right now I do, and don't, have one. You are here, in some aspects, but you are here in a more logically-oriented fashion than you are an emotional one. Questions of bills and equipment maintenance are easier for you to handle right now than questions of spousal maintenance. I hope that over the next few months you will become more practiced at emotional recognition, of perceiving the emotions in others and following them up with care and concern, if needed. Not having that is gut-wrenchingly hard on the uninjured partner; a half-year later, most everyone sees that you are starting to come home more often and you are starting to become more physically independent, but they don't see that psychological and emotional healing takes far longer than physical healing.

I know this much: when you snuggle up to me in bed and drape an arm around my waist, many fears quieten at once.

Somehow, somehow ... you are still here. You don't remember everything that happened before, but it is becoming increasingly clear that your fundamental personality, pre-accident, remains.

We're both pretty beaten up at this point, but somehow we're still here, and hopefully two or three months from now I'll reread this post and think, wow, so much has changed! and write again, but for now ... this is where we stand.

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It doesn't always come easily for me, but your post helps me realize that the people that care about me are dealing with a lot of problems, too. Thank you. It has also become fairly clear to me over the last week or so that I'm the one who creates a lot of those problems, and I'm truly sorry about that. I'm hoping that will get better. I often find self-determination to be a difficult line to navigate right now (partly because it used to be so clear for me). Despite how I may have behved/spoken, I do truly appreciate the effort that so many of my friends and family have put into helping me through this. When I have problems expressing that, please help me understand that so I can get better and so I can help clear up my messed-up self-presentation.